But the fighter still remains.

In the clearing stands a boxer and a fighter by his trade and he carries the reminders

of every glove that laid him low or cut him till he cried out, in his anger & his shame

“I am leaving, I am leaving….”

But the fighter still remains.

 

My baby – this fight has taken so much out of you.

I sit here tonight listening to you set off alarm after alarm in your utter and sheer exhaustion. I see it in your puffy little dark-circled eyes, and I sense it in the heavy way you lift your arms and I know…I just know.

You miss your sissies and you miss your own bed and you miss being at school with all your new friends and you just miss feeling “better”…I miss all of those things too. But mostly I miss them for you. If i could take all of this from you I would, in a heartbeat I would do it. But this is not how it works. YOU are the one with the story to tell my beautiful blue-eyed girl. YOU are the one who has grace and strength well beyond her years. YOU are the one who will be so mightily used by God…and YOU are the one who will teach us all about the important stuff of life, and how to live it fully.

It has been a long couple of weeks.IMG_7108

Our time in the “safe” walls of the picu is coming to an end. You are not quite out of the woods, but close enough to be home to finish getting better. You haven’t quite made “the flip” yet, but I have a feeling that this time it will be less dramatic than in times past. It will be a gradual returning of the strength you have lost, and the sparkle in your eyes. But it will return. I know it will. Because even after all these things have laid you low, the fighter in you still remains. And always will.

I have tried my best to fight for you this time…i hope I did a good enough job. I hope you are as proud of me as I am of you.

I hope you know that you are so very loved….not just by me, and daddy, and sissies. But by your grandmas and grandpas, cousins, aunts, uncles, friends…and perfect strangers around the world. All because you get up every day and you find something to smile about. You are amazing – do you know that?
I hope you know that you are so well equipped for this fight because of their prayers.

And because you are surrounded by an amazing team of nurses and doctors. You have made them all earn their keep this stay. you have taken their boxes and their textbooks and thrown them right out the windows in true Kendall fashion. But they have loved you and rejoiced with you and fought for you almost as fiercely as I do.
I know you are in so much pain baby, and I hope between me and your kickass nurses we can get you some relief soon. You fight so hard and it’s time for us to help give you a break from this fight for a little while. And then you can rest…and in a few days we will have you “better”. And then you can come home and fight there…

Sleep good my sweet baby girl. Rest well so you can fight more tomorrow~ Never stop fighting….
I’ll fight for you til my last dying breath~

I love you.

 

~mommy.

 

 

[Read more…]

One foot in front of the other.

Just keep moving forward.

That’s how it’s been around here since getting home from the hospital a little over a week ago.

Kendall’s care can be overwhelming sometimes – just the thoughts of having to keep her healthy and infection free and functional – so much of that responsibility rests solely in my hands. We do not have very many nursing hours covered. in fact almost none. So not only am I adjusting to the back to school routine, I am doing all of Kendall’s care, and Ben is back at work (he travels most of the week).  I’m not saying this for sympathy – I’m just explaining why I look like a crazed wild beast if you happen to see me trudging through walmart or on my fifth trip to McD’s for a large coke this week/day. We’ve all been fighting some random allergy/cold/sinus stuff since last Thursday to varying degrees, and I feel like mine is taking up residence in my lungs, and making for some not-so-good nights of sleep. The tireder I get, the more overwhelmed I feel. The more overwhelmed I feel, the closer I am to tears and letting my fears get the better of me. The more those fears are able to take hold, the more my eyes get off the prize – the fact that we have SO MUCH HOPE for Kendall, the fact that God chose to give her back to us here on earth for some reason bigger than I could imagine, the fact that she is here, laughing and smiling her way through every day in spite of all she deal with.

IMG_1921

So I try to stay focused – on the good, positive steps forward. Her labs are looking stable. Her kidney values are within a few points of returning to “normal”. She is starting to bear more weight and even take a few wobbly steps here and there. She’s begging for playdoh and making messes with whatever is within arms reach of where she sits on the couch all day and she’s loving having mommy to herself while sissies are at school. She LOOKS fabulous. And that almost makes it harder to realize that her battle is internal. I have no idea what is going on in her bloodstream or gut – and that drives me insane. I have to let those fears go. I know God is in control.

21 days from now she will have her next IVIG infusion. That will give me breathing room. It will be another dose of “immune system” that will buy her some time. It’s all about time to me right now. It is hard sometimes to walk around like things are normal and fine and good – all the while in the back of my mind is a constant running algorithm of how she’s really doing. Inside. Knowing she’s a ticking time bomb. Focusing on that “three months” goal we have – break the cycle, get her three months infection free, her chances of survival will drastically increase. three months three months three months. Make it to her birthday make it to Thanksgiving make it to Christmas.

Make a wish.

we got a call from Make a Wish today. Her doctor filled out and submitted the paperwork for a wish for Kendall. This is bittersweet to me. I know that MAW isn’t just for “terminal” kids anymore, and that LOTS of kids get wishes and that it’s for any child who goes through a lot medically and just needs/deserves a break from the every day. But to ME – it’s always been something for the really sick ones. I have just never wanted to see Kendall as being sick enough to get a wish. And really – there’s no guarantee that she WILL get a wish. Maybe the MAW granters will decide that she isn’t sick enough to qualify. Maybe. and yet – I know she deserves this. I know it doesn’t mean she’s “that sick”. I know all of this. I’m just processing it out loud here. Don’t feel like there’s something I do need to hear/know about the program – I know it. What my head knows and my heart can accept right now aren’t quite aligned. It was just – It was a moment. Just a moment. One I can’t quite categorize right this minute.

But speaking of making wishes and having them come true – I get to have that. on thursday. I get to go see Mumford and Sons – a folk band that I am enamored with – in concert. Still cannot believe it. A friend was able to get a couple SUPER cheap lawn seats, we had enough miles for a cheap ticket, and the stars aligned. It has been something to look forward to – which I have desperately needed these past few weeks. I cannot wait to sit and soak up their amazing musical talents and have it speak to my soul. I am beyond excited!!!

I feel like I have so much more to say – especially on this night, exactly one month after her horrific night in the ICU. I still haven’t quite processed through all of my feelings surrounding that night. I don’t know that I ever will process through all of it – but I think I have to get it out somehow, or in some way. I don’t think you can fully grasp just how amazing her current state of health is unless you can grasp just how very very close to dying she came that night. It is a part of her story and she deserves to have it told. and I will tell it. Maybe after a few days away to recharge and restore my soul.

sorry this is kind of scattery.  It’s part of why I’m posting it so late at night. Random semi-useless drivel that doesn’t need to be dwelt upon in the daylight hours.Anyways – hopefully my next post makes a little more sense.

Peace out.

The T.

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